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Old 01-28-2010, 03:08 PM   #1
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tinkertot HB User
Why do another lupus test, for the 3rd time!!!

Hi,
Had a blood test done just over a year ago for Lupus, it came back borderline. Mt neruro refused to do another. However, today I was diagnosed with Fibromyalgia and the Rheumy insisted that he do another screen for Lupus!. I had four lots of blood taken for the Lupus and a load of others done, routine, I guess, eg: ESR, TFT's and so on.
I was quite shocked as I thought considering the lupus test had been done a few times, why do it all again.
I do get alot of symptom that relate to Lupus, but that could be part of fibro too. My hair doesn't fall out, as far as I am aware all my organs internally are fine. I do get a mild rash around my neck, that never seems to go fully, but that could be my perfume!. I get chronique fatigue, skin crawling, hives, brain fog, constant pain in my lower back. I have to admit, that never goes. However I am used to that in an odd sort of way, my muscles ache terribly, especialy my upper arms. I have no butterfly rash on my face, never have. But I do have a multitude of symptoms that just go on and on. IBS, my hands swell if I do too much manually. I get terrible headaches, like cluster headaches that go for weeks then dissapear. I suffer from night sweats, my skin has become rubbish, very dry and the dry and very flaky on my legs aswell.
Years ago when they were trying to figure it all out, they thought initailly I may of had a stroke, as I had a left sided palsy was in a wheelchair for 3 months. I have been in and out of one ever since. I have panick attacks, and have been passed over since revealing this as a person with issues who is obviously depressed!. What a cop out.
I cannot stand noise, or sudden noise, and I had the schrimmers test that came back positive.
All this and much more and its Fibro. Why do the Lupus test again?. It either is or it isn't. I feel like I am on a constant merry go round, what next???

 
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Old 01-28-2010, 05:03 PM   #2
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Re: Why do another lupus test, for the 3rd time!!!

Tinkertot, hi. I'm only a patient, but it's my understanding that blood values can go up & down as people flare/recede. Finding the culprits is pretty "hit & miss" in some patients.

Did your dr. discuss your dry Schirmer's result? I *think* it *may* suggest Sjogren's syndrome, another autoimmune. Lip biopsy is considered the most definitive test for Sjogren's, I believe. Problem is, even if Sjogren's were proven, that wouldn't rule out lupus, because lupus & Sjogren's can co-exist.

I had many of the same symptoms you note, but never a palsy. (Sounds awful & I hope you recovered FULLY.) I was finally diagnosed with lupus, based on low-odds bloodwork: positive for anti-Ro but stayed ANA-negative. (This "subset" is called "Ro-lupus".)

It does makes sense to me that your rheumie is revisiting lupus. With what you wrote, I'd suspect that lupus, Sjogren's, and antiphospholipid syndrome are at least *some* of the possibilities. (There's a "sticky post" with info on antiphospholipid syndrome at the top of the thread list.) Have you visited your local library & borrowed books on lupus? I hope you post more soon. Sending best wishes, Vee

Last edited by VeeJ; 01-28-2010 at 05:04 PM. Reason: spelling

 
Old 01-28-2010, 06:13 PM   #3
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Re: Why do another lupus test, for the 3rd time!!!

I have both lupus and FMS (as well as sjorgren's, scleraderma, raynauds, and lymphoma). Your symptoms seem to me to be more than FMS. Maybe the sjorgren's is causing the majority of your problems but Vee is right....many of these diseases overlap. The reason to find out if you have lupus is so that a treatment plan can be developed so that you feel better. Have you seen a rheumatologist?

 
Old 01-29-2010, 06:44 AM   #4
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Re: Why do another lupus test, for the 3rd time!!!

Hi,
Thanks for your replies. I have seen a rheumy, saw him yesterday. He was interested to know that my schreimers test had come back positive. He wasn't aware of that, or the fact that mt original Lupus tests were borderline. At least one of them was borderline the other one was negative. That is very frustrating. Its like a game of cat and mouse.
I don't dispute the diagnosis of fibro, and I understand it can make you very poorly. However I have had times that I would consider poorly as an understatement, as would others around me. I have been in hospital more times this last eighteen months than I care to remember. I thought at one point it was the end, and I felt SO ill, I was almost ready for it.
My blood pressure is always low, (guess thats better than being high), but dangerously low on a few occasions. I was blue lighted in at one stage as I seemed to be slipping into a semi coma state. I could not communicate, my pupils were dilated and I really don't remember alot. I lost alot of weight, in fact 3 stones in 3 months and was literly kept going by minimal fluids. My GP doesn't like rocking the boat with consultants and was reluctant to admit me, I still don't know to this day how I survived that ordeal, I would rather of died, than to have kept vommiting.
I had a lumber puncture a around 15 months ago and it came positive, it was not indicitive of MS as the o bands were in my blood aswel, but they just said "don't know".
I suffer from chest pain at times, and my god it feels like a heart attack, the pain is unbearable. I have had my heart tested and its fine, however they said its a condition called Costiochondritis.
I constanly have chest infections or colds and a sore inflammed throat. I have taken antibiotics in bulk, yet it just re occurs.
I now have drops for my eyes as they get inflammed quite regularly. It feels like grit, and they irritate and become ve4ry red and swollen. In fact I now know that my symptoms are about to flare up, because my eyes are a good indicator of it all starting.
What if this test comes back negative? doesn't really leave me anywhere to go. I have been told its fibro and I am sure its contributing, but in the back of my mind I don't think its the full picture.
Thanks ...

Last edited by tinkertot; 01-29-2010 at 06:45 AM.

 
Old 01-29-2010, 11:01 AM   #5
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Re: Why do another lupus test, for the 3rd time!!!

Tinkertot, I went to my local library & took out books on both fibro & lupus. Eye-opening! I'm merely a patient, but as Heidi said, what you describe sounds greater than fibromyalgia to me, too. I honestly don't think "fibro-only" patients tend to be so bad they're hospitalized.

But you can have other things along with fibro, by the way.

I'm glad your rheumie became aware of your earlier findings yesterday. It's very important that he be made aware of all past events. Keep us posted, OK? Sending best wishes, Vee

 
Old 01-29-2010, 11:38 AM   #6
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Re: Why do another lupus test, for the 3rd time!!!

I wanted to chime in as well. I have had tests that were suggestive of Sjogren's. I also was diagnosed first with Fibromyalgia and had about 5 years of failed medication trials for Fibromylagia. It was a second Rheumatologist who found the Lupus. I have to say that not all of my tests were positive, but enough that pointed to something more was going on than just the Fibro. ANA was positive, IGG, IGM and CRP. It was the culmination of all my symptoms and the fact that nothing tried seemed to help that led the Rheumie to finally give the Lupus diagnosis. I am surely glad that he went that route as I have had much better response since beginning the Lupus meds. I know that even though, I have a systemic disease I am feeling my symptoms are better controlled now than before this Rheumatologist did a workup. I would hang in there. BTW the sticky posts at the top of this thread (lab tests) has a wonderful link that describes the difficulty in establishing a lupus diagnosis when one has a fibro diagnosis. So many of the symptoms are so alike. BTW 25% of Lupus patients also have Fibromyalgia. Just hang in there, I think your doctor is on the right track.

Last edited by goldyfm; 01-29-2010 at 11:40 AM.

 
Old 02-11-2010, 09:00 PM   #7
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Re: Why do another lupus test, for the 3rd time!!!

Quote:
Originally Posted by tinkertot View Post
Hi,
Had a blood test done just over a year ago for Lupus, it came back borderline. Mt neruro refused to do another. However, today I was diagnosed with Fibromyalgia and the Rheumy insisted that he do another screen for Lupus!. I had four lots of blood taken for the Lupus and a load of others done, routine, I guess, eg: ESR, TFT's and so on.
I was quite shocked as I thought considering the lupus test had been done a few times, why do it all again.
I do get alot of symptom that relate to Lupus, but that could be part of fibro too. My hair doesn't fall out, as far as I am aware all my organs internally are fine. I do get a mild rash around my neck, that never seems to go fully, but that could be my perfume!. I get chronique fatigue, skin crawling, hives, brain fog, constant pain in my lower back. I have to admit, that never goes. However I am used to that in an odd sort of way, my muscles ache terribly, especialy my upper arms. I have no butterfly rash on my face, never have. But I do have a multitude of symptoms that just go on and on. IBS, my hands swell if I do too much manually. I get terrible headaches, like cluster headaches that go for weeks then dissapear. I suffer from night sweats, my skin has become rubbish, very dry and the dry and very flaky on my legs aswell.
Years ago when they were trying to figure it all out, they thought initailly I may of had a stroke, as I had a left sided palsy was in a wheelchair for 3 months. I have been in and out of one ever since. I have panick attacks, and have been passed over since revealing this as a person with issues who is obviously depressed!. What a cop out.
I cannot stand noise, or sudden noise, and I had the schrimmers test that came back positive.
All this and much more and its Fibro. Why do the Lupus test again?. It either is or it isn't. I feel like I am on a constant merry go round, what next???

 
Old 02-11-2010, 09:11 PM   #8
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katseye1 HB User
Re: Why do another lupus test, for the 3rd time!!!

Tinkertot,
At one point in my life I had silver dollar size red blotches around my stomach area and a red rash covering my forhead. Went to the doctor and he did a biopsy of one of the rashes and it came back Lupus. So we did the blood work and that came back negative. I have had a few more test since and nothing shows up, but one of my doctors told me to treat it like I have lupus rather then ignore it. So I understand your frustration. I also have Fibromyalgia and was just diagnosed with a fatty liver. I don't drink so whats up with that. My fibro is pretty severe and adjust my days to how I am feeling. But other days I just push on and suffer the consequences later. Five years ago I started with the Bells Palsey symtoms, but have never been diagnosed with it. My son has had some severe attacks and has to watch himself. Not sure if it is a hereditary thing. I suffer like you from a mutitude of other problems since the fibro. Gastroperisis and cyctitis. All not very fun. I hope things get better with you and keep talking it helps to have someone whounderstands your frustrations.

 
Old 02-12-2010, 07:58 AM   #9
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kinikki HB User
Re: Why do another lupus test, for the 3rd time!!!

Hello, Im sorry to hear of all the problems you have suffered. After 10+ yrs of symtoms and multiple lupus tests mine just came back positive after being negative. I am not sure why it can be negative for yrs and then turn positive but mine did. Im sure the Dr you are seeing just wants to be on the safe side. I wish you well. Take care.

Nicole

 
Old 02-16-2010, 10:47 AM   #10
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shibels HB User
Re: Why do another lupus test, for the 3rd time!!!

I was just dx'd w/FM and CFS and they're still trying to determine why my labs are off. They tested me for lupus as well but my Rheumi said only 20% of lupus patients show up on blood tests -that we all want the blood labs to prove it but sometimes it is very hit or miss and if you do not have that anitbody at that particular moment - it doesn't show up. He also told me FM can be as mild as annoying to people in wheelchairs - stress and positive mindset help FM patients too - but of course that's easier said than done. So definitely go back for another test for lupus and they can dx you without the blood tests.

Good Luck! I know the rollercoaster - I"ve been on mine since Oct --- one day was fine and the next a mess!

 
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